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Monday, 28 May 2012

For anyone who might be interested, here is a slightly longer (original) version of the article I wrote recently for the Guardian about Atos and the Paralympics.

"I love the Olympics. One of my earliest memories is of the
entire family setting alarms for 4am to watch Robin Cousins win gold in the ice
skating. We always watched every event, from archery to synchronised swimming.

I loved the superhuman excellence, the sheer grit and
determination on the faces of the athletes. The dedication to perfection, the
sacrifice that meant nothing – nothing was more important in their lives than
that finish line or target.

I clearly remember the first time the Paralympics came onto
my radar. I watched, literally open mouthed as Tanni Grey-Thompson set her eyes
on a distant prize, gritted her teeth, shut out the thunderous noise of the
crowds, then hurtled down the track with such speed and grace, it was hard to
believe she had any kind of disability at all.

I was similarly awestruck by my
first glimpse of the seemingly bionic Oscar Pistorius. As he raced down the
track on those incredible prosthetics, I could hardly believe my eyes. Did I
enjoy his achievement more because he was disabled? I think I did a little.
That same sense of overcoming great challenges that I had always so admired in
traditional Olympians, magnified 100 times in a man determined to be the best,
whatever the odds.

When I heard that the UK had won their bid to host the 2012
Olympic Games I was thrilled. I saw it as an honour, a wonderful chance to show
these superhuman athletes the respect and honour they deserved. To celebrate
their achievements, and though I was ill myself by then, to actually have the
chance to go to some events! I told my children about how wonderful it would
be, described the atmosphere, saved every penny I could.

My first disappointment was the price of the tickets. I’d
saved £1000, determined my children would get to take part in this historic,
once in a lifetime event. But I wanted them to follow an event through some
heats and a flagship final. Even my £1000 wasn’t enough, and even if it had
been, the finals were all way to late in the evening for small boys. Soon,
accounts of corruption and corporate favouritism emerged. Most of the best
tickets would go to dignitaries or corporate sponsors. I was heartbroken.

Soon stories emerged of corruption all through the event –
billions spent on terrifying security, a budget out of control, decadent perks
for the Olympic committee that read like the last days of Rome. A dedicated
traffic lane that could only be used by VIPs and sponsors. Still the budget
raged out of control, mocking austerity Britain. More security, drones above
the stadium, a London more evocative of the Gaza Strip.

But as a disability campaigner, the greatest injustice had
to be the day we heard that Atos would be sponsoring the Paralympics. The very
company charged with denying disability on a national scale through the
government’s flawed and dangerous “Work Capability Assessments.” As hundreds of
thousands of “everyday” disabled people were hounded and humiliated into
poverty, told they were fit for work with kidney failure or paraplegia or MS,
the same company had the cheek to buy a slice of this very “superhuman” image
of disability.

It seemed utterly symptomatic of a corporate culture, out of
touch and out of control. As Murdoch crumbled, the Met were exposed as
complicit and corrupt, as our politicians fiddled their expenses, it seemed
somehow fitting that a company hurting so many disabled people should sponsor
the Paralympics. Dow Chemicals got in on the act too, causing India to threaten
a boycott, MacDonald’s, that ultimate purveyor of junk food sponsoring the
pinnacle of fitness; the very last gasps of decaying capitalism seemed to preen
her feathers.

Some have called for a boycott of the Paralympics until Atos
pull out. Personally, I think this is the worst possible thing we could do. Do
the athletes who gave their every waking moment to be the best deserve to have
that taken away from them by a company already responsible for the suffering of
so many sick and disabled people? Is there any greater contrast to the
arrogance and greed of the corporate sponsors than the selfless dedication of
human beings who simply want to be the best they can be?

These same companies will try to tell us that these paragons
of disability prove that anyone can do it if they only try. This is no more true for disabled
people than it is for the able bodied. Very, very few of us are born to be the
fastest or the best. But we are born to try, to strive, to overcome and to
achieve our own greatness. May the incredible feats of our finest athletes –
whether disabled or able bodied – remind our corrupt elite of what it is to be
truly brave and decent.

Saturday, 26 May 2012

I wrote this years ago, after a long hospital stay. You never truly appreciate simple things until you've been deprived of them. Just a warm breeze on your skin, a kiss from your child, the light flickering through leaves on the table, gives more joy than I could possibly explain.

Friday, 18 May 2012

Phew. Thank goodness for that! "Worried veterans" will now be exempt from "humiliating retests" that could have seen them "stripped of vital cash" They will no longer get the "same grilling as cheats and scroungers."

I thought you said "genuinely disabled people" had nothing to fear from disability benefit cuts?

I thought you said we needed a humiliating grilling to ensure we got the right support? What if our "brave heroes" don't get this promised support? How will they find work? How can you be sure they won't just "fester"?? Are you not "abandoning them to a lifetime on the scrapheap?"

So which is it Mr Cameron? If the tests are fair, then surely ex-military personnel have nothing to fear? If they are not assessed, how will you avoid all the festering?

If the assessments for sickness and disability benefits are not fair, then did you not ought to be booking a one way tickets to Strasbourg, to attend a trial over the breach of human rights of over 5.2 million disabled people?

What of other limbless souls. Is there something more inherently worthy in losing a limb in battle than losing one saving a child from an oncoming train? Is a soldier with PTSD more worthy than an aid worker? Is an airman suffering terrible disfiguration from artillery somehow more disfigured than the woman who had acid thrown in her face so she could never marry the "wrong" man. Are you sure they're "more worthy"?

Or is it as many of us have known all along? The tests are a "humiliating grilling" "genuinely disabled" people will be "stripped of vital cash", and you don't care one tiny bit unless the disability fits your Eton-narrow view of "worthy"?

To maintain the military metaphor, I believe Mr Cameron, you have been hoist by your own petard sir.

**********

By the way, I absolutely refuse to fall for their divide and conquer. I'm delighted for those service men and women who no longer have to live in fear. Every step forward is a step in the right direction. I just hope they will join with the rest of us to stop the persecution of all sick and disabled people.

Saturday, 12 May 2012

Unfortunately he'd gone from "Not sure it's bad enough to do anything" to "Not sure how much we can save"

Apparently, the 4th blockage was so narrow, my consultant couldn't even get into it. There was inflammation in between the narrow bits, or "active disease" as they like to call it. The whole ulcerated, pussy, bleeding mess of it is gonna have to go.

Cue next wave of shock at the overwhelming effectiveness of my denial. Whining "But I didn't even know" is not proving very helpful.

So, a resection. Cutting a bit away. I haven't had one of those for 15 years!!! It is Not Good News.

Resections are more dangerous. They have to cut a section of bowel away and join the ends back together again. Cutting through the bowel risks sepsis - if any bowelly matter escapes into the blood or the join leaks, Suey will be in trouble.

With a resection, the whole bowel takes a nap. The shock literally paralyses it and it will only wake up in it's own good time. Usually 4 or 5 days, but sometimes never.....

Resections are more painful. You have the external cut and the internal one vying for attention.

Worst of all though (the one we rarely even whisper) is you only have so much bowel. Mr Gaunt-Looking-Surgeon reminded me, in that matter-of-fact way that surgeons do, that I don't have much left. You lot have about 4 metres, I'm down to 1.5. Continuing his mechanical appraisal, he reminded me that you need at least a metre to survive. Odd how surgeons leave statements like that hanging, as though I could somehow stop frivolously wasting bowel.

I didn't ask what then.

So, we start to fervently hope that my messy-bit is less than 50 cms long. Preferably waaaay less. Mr Gaunt-Looking-Surgeon thoughtfully reminded me that I'm only 39 and will certainly need more surgery in the future. The phrase "conserving all we can for next time" hung in the air.

There are lots of things I never think about. Close friends and family know the unwritten code. We never talk prognosis or consider "what-ifs" We pretend that we don't know how high my risk of bowel cancer is or how badly my osteoperotic bones have already been eroded. But most of all, we don't discuss the TPN people.

As we speak, the lipidy, fatty gloop is drip-dripping into my main artery, plopping just above my heart. At this stage, it might as well be life support. I'm dangerously underweight, my bowels are all cloggy and without this frankenstein nutrition I would die. I look - even feel - remarkably sprightly for someone at death's door, but there we are.

I've joined the most unfortunate club in the world.

But real TPN people, well, they never eat again. Nothing. Ever. No lazy brunches, no coffee with friends, no early cocktails or ice-crystal gin clinking in the sunshine. No champagne at weddings, no decadent chocolate treats, no consoling chicken man-flu soup, no anniversary dinners.....

This is the "less than a metre" fate.

I said I'd never do it, said it was a bridge too far. Funny how you never know exactly how far is too far until you get there, eh?

Oh well. Following this uncharacteristic consideration of the dark side, shall we pretend we never spoke of it? I prefer it that way.

And one last thing. I will be asking to keep the putrid mess they hack away. I'm not sure if they'll oblige, but I'm going to ask if they can cut it into four pieces and seal them in separate jars. Then, when I'm well enough, I will send them as gift baskets. One to Mr Duncan Smith, one to Mr Freud, one to Mr Grayling and one to Ms Miller. I hold them personally responsible for this particular crisis.

Mainly, because opposing them had to be done and it nearly killed me, but a tiny, tiny part of me may have believed them. Believed that if I just tried harder, worked more, ignored my symptoms, stopped being such a wimp, addressed my "illness behaviour" I really could work again.

The rotting, stinking, evil mass I will be sending them, seems a fitting reflection of their black hearts. Maybe, just maybe it will convince them that forcing people to work who are clearly incapable of doing so is murderous.

*******

Oh, and PS, let's not forget my claim for DLA was rejected, social services can't help me and there are no descriptors for ESA that would mean I qualify. According to our politicians, I'm just fine.

Wednesday, 9 May 2012

"Not too bad" is my situation normal - diarrhoea, tiredness, sometimes pain, a sprinkle of malnutrition and a pinch of nausea. The hardest thing for people to understand who aren't ill, is that I really don't notice any more. It doesn't hurt less, I don't feel less sick, I just don't notice.

On a bad pain day, I don't realise until I find myself crying because I've run out of milk or when my kids spill a drink. I'm "fine"

When I'm not fine, I'm "just not right". I find it hard to be more specific than that. After all, I already feel ill, I already feel sick, I already get pain. "Just not right" is something on top of that. This time it's been an extra dollop of exhaustion and a string of chest infections. I didn't think I felt too bad, but it was harder and harder to make it to school to collect the boys, harder to get round a supermarket. The exhaustion that I always feel became an insurmountable mountain.

After weeks of tests here in Addenbrookes, I had a procedure yesterday (colonoscopy) They had found a suspected narrowing in my bowel and thought that if they opened that out, the other symptoms might just fade away.

If you're squeamish, look away, but a colonoscopy involves shoving a tube up your bottom and weaving it up and up and up until it get's to the right place. It's very unpleasant.

Yesterday afternoon, procedure completed, a rather nervous looking doctor appeared at my bedside. She had a look of awkward pity on her face and long term patients know that if a Dr looks at you with pity, it's not going to be good news. It takes a lot to invoke pity in a doctor.

It turns out that, yet again, I was riddled with crohn's. My poor consultant had opened up THREE narrowings, but when he got to the FOURTH it was too tightly closed and he had to give up. In between the narrow bits was active disease, something I hadn't thought they would find at all. Basically, I'm a checker-board of obstruction, inflammation, obstruction, inflammation...... Again.

But there's more. The gamut of tests and tubes have found that I also have bronchiectasis - a lung disease that makes you more prone to chest infections. Exhaustion is one of the main symptoms.

Erm, and something else. They found I have Addison's disease too. My adrenal glands have packed up, leaving me low on adrenaline. The clue is in the name. Exhaustion is one of the main symptoms. It's getting a bit clearer to see why I couldn't make it round Sainsbury's eh?

If I stay in here much longer, I'll have a disease for every day of the week.

Ah well, sometime soon Mr Gaunt-Looking-Surgeon (or if I get lucky, Mr Genius) will re-appear and set a date to unzip me (again) hoover me out (again) and patch me up. (again)

They'll be setting up a central line feed into my artery, so I don't waste entirely away before surgery. I'll just keep sitting here with my West Wing DVDs and toffee bon-bons trying not to think about anything very much.

I miss my babies, my Dave and my lovely, sunny flat. I miss my elephantine beanbag and tea that is actually hot. I miss chilled wine and home cooked meals.

Sunday, 6 May 2012

I've been in hospital three and a half weeks now. Normally, I'd have written a blog post most days, but I've just been too ill. I can't remember the last time I was too ill to write. I always write. Even if no-one ever read it, it was my safety valve, my confidence, my way of understanding my own feelings and emotions. I've written an hour after major surgery, during a small-bowel enema (!) and whirling in the middle of a heartbreak.

But this time, I've been too ill.

I tell you all this to try to convey just how ill. I can write bombed out of my head on opiates (sometimes it's more interesting ;) flat on my back unable to get out of bed, (actually I do that quite a lot) faint from hunger after days of vomiting - nothing usually stops me. But this did.

I didn't come in here very ill. The crohn's was broadly fine (well as "fine" as it ever is...) but I'd been getting chest infections for months. My local hospital didn't want to know because all my notes and specialists were here in Cambridge, 130 miles away from home. It became clearer and clearer that I needed a whole MOT of tests and investigations, so the only way was for me to have them done as an in-patient up here.

Over the years, the many, many years of trying to control this cruellest of diseases, I've learnt a thousand things about my body. Mainly I've learnt that I'm rather a delicate flower. (and the Tomboy in me growls) I react very badly to most medications. There are only two anti-biotics I can tolerate, I'm horribly allergic to most painkillers - especially morphine. All of the crohn's drugs, one by one, have given me unbearable side effects. The contrast dyes or barium they use for their tests makes me sore for days, I can't tolerate their gloopy, glucose-packed feeds or their sulphuric enemas that rip through bodies like napalm. I'm even intolerant to calcium and iron supplements, B12 shots and aspirin.

So, slowly, slowly, I learnt that the best treatment for me was simplicity. No more, no less. Good, healthy food, cooked from scratch. No toxic chemicals, no pointless additives, not even thickeners if a reduction will do. No neon drinks or fizzy pop. No synthetic creams or juice "drinks". Add in a dose of sunshine and I feel zingy and alive. Sunshine, fresh air and simple, freshly cooked food.

I think of it like a set of scales now. The most sensitive scales - feather sensitive.

If I go away for the weekend and eat someone else's food, even the thickener they use in their sauces might send me vomiting through the night. Eating a little later, or a little earlier, not being able to eat little and often, (because most people don't do that) all play havoc. Too much cream or too little salt, too much starch or not enough protein. Even the change in water can be enough.

I balance a tightrope every minute of every day and it's become so automatic, I forget I'm even doing it. More importantly I forget it's actually a full time job.

When I came into hospital, I was immediately pumped with litres and litres of contrast dye for a CT scan, then more for an MRI. I mentioned that it made my crohn's flare up.

They insisted I drank supplement drinks to "build me up" - a cacophony of chemicals. I suggested I was better just following my normal finely balanced diet, but they were convinced it would help.

Then they changed my painkillers. As I always do, I warned them that it had never worked out all that well. I reminded them of the times I've temporarily died from morphine or screamed and writhed through a night of new meds. This new drug was a morphine derivative, and they assured me it would be fine.

Next they inserted a tube through my nose, deep down into my bowels to feed me through. I mentioned that feeds had always made me sick, but the Dr said that couldn't really happen. I asked him if he ever blushed when he told someone who had actually experienced a condition for 28 years what they could and couldn't feel, but he just smiled and assured me it was for my own good.

By last Thursday I was a mess. By the following Wednesday, I was in terrible pain, vomiting every twenty minutes or so. A headache so splitting I tried to keep one eye shut. I was so dizzy and sweaty they had to keep changing my sheets. I couldn't talk, get out of bed or eat at all. I couldn't even sip a cup of tea and keep it down. Suicide nausea filled every atom, I felt sick in my toenails, in my hair. I didn't want to blink I felt so sick. I went 4 days with no nutrition at all as the feed kept drip-dripping into me only to bounce back out. I went 3 days with no fluids.

I kept telling them it was the feed - I'd had it once before and spent 24 hours vomiting non stop - but they were still adamant they knew best "Just try one more night Susan..."

I kept telling them it was the new drug - I recognised the splitting headache as a precursor to the dramatic morphine-crashes of earlier stays. I recognised the sweats and the dizziness. What's more, morphine doesn't relieve pain for me at all, and so I endured that, raw and untreated too.

I kept telling them the contrast dyes gave me constipation and inflammation, but they said it was "for my own good - you do want to get better don't you Susan?"

Finally, two days ago, I called a halt. I asked them very firmly to stop the new painkiller, to stop the toxic feeds, to stop the new vitamins and re-introduce my old painkillers. I made them pull the tube out of my nose just to be sure.

And here I am, this morning feeling perkier than a new born lamb. I might actually gambol.

I'm hungry, I'm thirsty, the suicide nausea has passed, the pain is back under control, I'm cheerful and the headache has gone.

No-one will realise that I was right all along. No-one will remember my awful reaction to the feed in time for the next patient. No-one will remember that their so-called "safe" morphine based drug does not avoid allergy for all. No-one will finally accept that certain painkillers actually just do not work on me. The dieticians won't remember that this particular feed nearly killed me. They will still assure the next patient that "you can't be allergic to it" or "it can't get trapped it's only a liquid" No-one will make a mental note and avoid CTs and MRIs in my case next time.

I know this to be true, because the same thing happens every time I'm in hospital. I'll carry on having the same battles, the same tortuous process of elimination, the same miserable episodes We will continue to flush billions and billions of pounds down the drain until we :

LEARN TO LISTEN TO THE PATIENT.

I've been on a horrific, agonising journey; enduring not living, surviving not healing and finally, I just ended up back where I started.

Don't get me wrong, the Dr's did what they thought was best. No-one was negligent, no-one cruel, they just didn't listen. Until they do, we will continue to throw billions of pounds away every year, not to mention the unnecessary suffering we will cause along the way.

Thursday, 3 May 2012

I've finally got my laptop back, and despite a list of things I need to write longer than a mile, Louise Mensch has filled me with such fury that they will have to wait.

Through my opiate-vomitty-hospital-bed-haze, I've watched the most nauseating example of womanly-wiles I think I've ever seen. I first noticed menschgate when I saw a tweet from Tim Montgomerie and Dan Hodges, listing examples of "abuse" Louise had suffered online. The tweets weren't very offensive at all - in fact one asked a very sensible question.

I felt feminist stirrings and it'as incredibly rare I discuss feminism at all. Why were these men defending her honour like some medieval chattel? Was she not a successful, powerful woman? Was she unable to take a bit of internet silliness without a shield of chivalry?

I pointed out that stupid, misguided, humour from stupid misguided fools, was not the same as genuine threats. Within minutes, scores of furious Tories flooded my timeline, accusing me of supporting violent attacks!! They were still trying to pick a fight with me hours after my drug addled brain had forgotten who Louise Mensch even was.

Now, what seemed to happen to me, was that Louise Mensch said something totally silly and thousands of people responded by saying "You're really silly." Of all careers, politicians must know that if you're going to say silly things, people will fairly swiftly call you silly.

Those politicians that use the internet regularly and engage on social media (which I admire) are perfectly aware that they will get abuse. I'm a woman. I write abut politics. I chose a male dominated arena to air my opinions. If I am so egotistical that I believe my opinions might be of interest to others, I have no right at all to complain when people disagree with me. When all of twitter disagrees with me at once, I accept that I'm probably wrong. There isn't a switch Ms Mensch. There isn't one big hive-mind that agrees to bully Tory women!! You made a fool of yourself and the world told you so. Deal with it.

But to go on to use the hashtag feminism??? FEMINISM???? When the basis of the argument seems to be "people shouldn't be mean to me because I'm a girl" made my blood boil.

Everyone gets twitter abuse, everyone. If some vitriolic, evil, pimple goes way beyond the boundaries of what's acceptable, you just block them and move on. You don't know these people, they don't have to like you. They don't have to conform to your ideas of what is polite or what isn't, what is funny or what is not. They can't upset you unless you let them. They don't cause offence, we allow ourselves to take it.

Unless we are to believe that Mr Montgomerie and Mr Hodges or even Mr Young have never suffered a wave of twitter abuse for saying something silly??

A while ago, someone threatened Kaliya Franklin with the gas chamber. She's Jewish and disabled. They said they would gas her to death, it was what she deserved. Now that's a genuine threat. The police rightly took it very seriously.

But standing in the playground, stamping one's feet and crying "it's not fair" is just embarrassing. To Ms Mensch, but more importantly to all women who struggle every day to achieve equality. Real equality, not equality-when-it-suits-us. Life isn't fair and most people over 12 have learnt this. Most women learnt it much earlier than that.

So no Louise, people didn't insult you because you're a woman, they insulted you because you're silly. Pleading special treatment because you have a uterus fills me with disgust.

Wikio

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About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.